Sleep dysfunction can feel like a heavy weight on top of an already debilitating condition. Many people long for sleep as a respite from their symptoms, only to find it out of reach, or even when they manage to sleep through the night, they frequently wake up unrefreshed. We are grateful for the insights on this relentless symptom shared through our recent Symptom Saturday survey. Whilst it is not possible to feature every response in a single article, every account is vital. They help shape future biomedical publications, convey the realities of ME/CFS to researchers, supporters, and the public, and guide our internal organisational education.
We have drawn together some of the common themes about the experience of sleep dysfunction.
Common ways participants describe the experience of sleep dysfunction include:
- Insomnia; Cannot sleep easily despite exhaustion; Exhausted but not sleepy; “Tired but wired”
- Feeling unrefreshed after sleep; Wake up exhausted; Jet lagged; Feeling like a zombie; Feeling poisoned; Feeling hungover or drunk
- Changing/unpredictable sleep patterns; Awake when others are asleep, asleep when others are awake; Waking up multiple times during night
- Dreading sleep; Frustrating; Torture; Lonely
- Amplified symptoms such as pain and cognitive impairment
Being awake when others are asleep, being asleep when others are awake, feeling exhausted but not sleepy, waking up several times a night, waking up in the morning feeling like you’ve pulled an all-nighter… sleep dysfunction manifests in countless ways in ME/CFS. Furthermore, experiencing constantly shifting sleep patterns makes sleep difficulties deeply frustrating to navigate.
Furthermore, sleep dysfunction can be a deeply isolating symptom. By shrinking individuals’ functional hours during the day, it cuts off family time, social activities, career opportunities, and the everyday moments that can enhance quality of life.
For those affected: even though living with ME/CFS can be profoundly lonely, you are not alone. There are many people around the world who can relate to your experiences and many who believe what you are going through because they (or their loved ones) are affected too.
As with any other chronic condition, the symptom burden of ME/CFS and its ripple effects are clear, profound, and can be overwhelming to people’s mental health.
We urge anyone in distress to consider reaching out to appropriate organisations or helplines, such as Mind or The Samaritans, for support.
This article is part of the Symptom Saturday series.
Read our comprehensive overview of sleep dysfunction in ME/CFS
